Youth participation and advocacy

Members currently live in Victoria or Tasmania but may have received treatment elsewhere. They are appointed for a three-year term.  

The Board aims to serve as the collective voice of AYA with cancer. It seeks to broadly represent the diversity of young people and treatment experiences. This is in terms of age, gender identity, cultural background, diagnosis, location of care and other attributes.  

We recruit new Board members mid-year and/or end of year, depending on vacancies. Young people can register their interest anytime via the link below. Applicants are eligible to join YCAB up until their 26th birthday.   

Established in 2010, YCAB’s purpose is to provide advice and guidance to:  

• The Victorian AYA Cancer Service 
• The Victorian Government  
• The broader health and community sectors

This advice and guidance relates to:  

• Models of cancer care, services, and referral pathways for young Victorians and Tasmanians 
• Environments and facilities where young people receive treatment and support 
• Strategies to support the health workforce to address the needs of AYA with cancer   
• Research relating to young people affected by cancer

The Board’s activities include healthcare sector-driven initiatives and youth-led initiatives. Healthcare sector-driven initiatives are those where others are seeking YCAB's advice and guidance. Youth-led initiatives are those developed and driven by YCAB, in consultation with other young people.

Some of their activities and achievements include: 

Developing position statements to influence health policy and services

• Fertility preservation 
• Access to clinical trials
• LGBTIQ+ youth health 
• Mental health and wellbeing

Co-designing youth-friendly hospital environments

• The Youth Cancer Centre and other patient areas at Peter Mac 
• An AYA room at the Royal Hobart Hospital 

Advising on services and programs relevant to young people

• Victorian Fertility Preservation Service 
• CanEAT Pathway

Guiding the development of age-appropriate resources

• Thinking ahead: your guide to school, study and work
• Getting to grips with general practice 
• Being ok….being you: a guide for young people who identify as LGBTIQ+ and have cancer 
• Can-Sleep: a guide to sleep for young people who have had cancer 
• ReGenerate: life after treatment 

Contributing content and advice for health professional education and training programs

• University of Melbourne’s Graduate Certificate in Adolescent Health & Wellbeing (Oncology)  
• eviQ’s online modules on AYA cancer care for nurses 

YCAB is governed by Peter Mac and reports to the Victorian AYA Cancer Service, who in turn reports to the Victorian Department of Health. YCAB also holds a seat on the state-wide Adolescent and Young Adult Advisory Committee. 

The Board meets six times per year online and in person in the Youth Cancer Centre at Peter Mac in Melbourne. Meetings alternate between two-hour weeknight meetings and five-hour Saturday meetings. 

Board sub-committees may be set up as needed and may involve attendance at extra meetings. Between-meeting communication is via email and members also have access to a Google Drive as an archival tool for all YCAB documents. 

YCAB is led by two members who serve as Co-Chairs. They are supported by the Victorian AYA Cancer Service Youth Participation Coordinator and Facilitators (AYA team). Co-Chairs share equal responsibility for Board operation. They usually serve for a two-year term, with eligibility following at least one year as a YCAB member. 

Members of YCAB undertake to:

• Represent young people affected by cancer in Victoria and Tasmania 
• Provide advice about AYA oncology/issues/services, with support from the AYA team 
• Read all correspondence before meetings 
• Communicate between meetings as needed
• Maintain confidentiality of member information, meeting content and documents circulated 
• Seek permission before engaging in discussions with other agencies while members of YCAB 
• Notify Co-chairs and the AYA team of any requests from media or stakeholders before any official business takes place 
• Uphold the values and culture as agreed by the Board in situations where your actions will reflect on the Board. Act in the Board's best interest 
• When acting on behalf of the Board: 
  • Represent the views of the Board rather than the individual 
  • Disclose any relevant engagements/activities you do outside of/separate to the Board 
• Attend all meetings and provide apologies if not attending as early as possible 
• Adhere to the Board’s Terms of Reference and Operational Guidelines 

The Victorian AYA Cancer Service (AYA team) undertakes to: 

• Support the preparation of meeting agendas and minutes 
• Assist in facilitation of meetings 
• Provide education, training and mentoring to YCAB members 
• Arrange and pay for YCAB travel, venues, accommodation and food 
• Ensure regular communication between the Board, Peter Mac and the Victorian Department of Health 
• Disseminate all communications as appropriate and provide extra support as needed 

Creating an environment of support, safety, inclusion and respect is everyone's responsibility. 

Board members receive annual training in the following areas: 

• The meaning of youth advocacy 
• The AYA cancer context and services that support young people with cancer  
• The components of Board governance. This includes how to:  
  • Chair a meeting 
  • Prepare an agenda 
  • Record minutes 
  • Communicate outcomes 
• Other topics as requested by the Board 

We also recognise that young people may encounter triggering situations as part of their membership on the Board. For example, this could be discussions they find confronting, or a fellow Board member becoming unwell.  

We have clear, discrete processes in place for members to raise any concerns. This also extends to the delivery of individualised or whole-Board support as needed.

YCAA consists of young people diagnosed with cancer between 15 and 25 years of age. Each member has had a diagnosis and/or treatment in the last five years. 

YCAA are eligible for membership for any length of time, up until their 30th birthday. They may be:

• YCAB members who have completed their term and/or want a more flexible approach to youth participation 
• Young people who applied for YCAB but were unsuccessful in obtaining a position 
• Any young person wishing to engage in advocacy work in this way

There is no formal recruitment process for YCAA. We invite young people to register their interest anytime via the link below. Our Youth Participation Coordinator and/or Facilitator will be in touch. 

The YCAA aims to improve experiences and outcomes for young people with cancer, and their support networks. It was set up in 2020 as an extra mechanism to the Youth Cancer Action Board (YCAB).  

While YCAB members act as a collective in representing the views of young people, YCAA members take on roles as individual consumers. This may be through formal or informal roles/opportunities, such as: 

• Completing surveys
• Participating in individual interviews or focus groups/group interviews
• Telling your story through public speaking or media opportunities
• Attending Youth Cancer Action meetups or forums
• Assisting with the development of resources/information
• Providing feedback/advice on health services or other initiatives for young people 
• Being a representative on a board, committee or working group 
• Assisting with the development or delivery of education and training for healthcare professionals
• Reviewing or advising on youth cancer-related policies, plans, programs and services  
• Advising/Participating in research or other opportunities for sharing opinions, views and experiences about young people affected by cancer in Victoria and Tasmania

Members opt in for specific projects or opportunities based on their availability and interests.

YCAA is governed by Peter Mac and reports to the Victorian AYA Cancer Service (AYA team). They in turn report to the Victorian Department of Health. 

There are no formal, regular meetings for the YCAA. The AYA team receives and assesses opportunities, then offers them to YCAA members. Allocation depends on members' stated availability and interests. Opportunities may also be communicated via an e-newsletter. We also use the e-newsletter to share:

• Opportunities to engage with other YCAA members and YCAB 
• Education and training  
• Other information that may be of interest

Once engaged in an activity, communication between the YCAA member and AYA team occurs as needed. This depends on the parameters of the activity and support required. Communication may be via email, phone or face-to-face/virtual meetings as needed. 

YCAA is supported by our Youth Participation Coordinator and Facilitator (AYA team). 

Members of YCAA undertake to:

• Represent young Victorians and Tasmanians affected by cancer as individual consumers 
• Engage in youth participation opportunities in alignment with personal availability and interests. This may include liaison and/or collaboration with YCAB or other YCAA members

The AYA team undertakes to: 

• Provide education, training and mentoring to YCAA as a whole 
• Arrange and pay for any required travel, venues, accommodation and food 
• Disseminate all communications as appropriate and provide extra support as needed

We provide YCAA members with tailored education and training as needed to support them in their advocacy role(s). This may occur at any point in their term of office, as the need arises. Topics may include (but are not limited to):

• The AYA cancer context   
• Services supporting young people with cancer and their family  
• The meaning of youth advocacy 

We also recognise that YCAA members may encounter triggering or distressing situations in their roles. This could be discussions or materials they find confronting, or someone becoming unwell. In such circumstances, the AYA team will provide tailored emotional support. Suitable referral pathways will also be provided as required.